Teenage Caregivers

National Newsletter - Volume 16, No. 2 - Summer '96

Eight year-old Brian Stansfield
gets up early each morning to read the newspaper to his
grandfather before leaving for school. Jessica Powers, 15,
hurries home from her extra-curricular activities to cook dinner
for her family. "When someone in your family has
Alzheimer's, everyone has to pitch in and help," says
Jessica.

A growing number of children
and teenagers have grandparents -- or even parents -- who
have been diagnosed with Alzheimer's disease. Often the affected
person lives at home and children help provide care. Caregiving
can be a 24-hour-a-day activity for some family members. And
sometimes, care requires an adult's full attention, making it
difficult for parents to consider how the disease affects their
children. "Even most support services and resource materials
are created for adult caregivers and seem to overlook
children," says Paul Raia, director of patient care and
family support for the Eastern Massachusetts Chapter of the
Alzheimer's Association. "But young people experience
different feelings and have unique needs."

Never too young to care

Even the youngest family member is
affected by a loved one's Alzheimer's disease. Raia believes
small children, in particular, benefit from information about the
disease. Without it, erratic behavior that typically accompanies
Alzheimer's can be misunderstood and even frightening.

Brian used to think he was to
blame for his grandfather's periodic outbursts. "Since
Thomas, Brian's grandfather, never directed his anger
specifically at him, we never realized he felt responsible,"
says Denise Stansfield, Brian's mother. "Now we set aside
time to talk with the kids about what's happening and how they're
feeling."

"Open communication and
education help make Alzheimer's less mysterious to kids,"
says Beth Boivin, president of the Alzheimer's Association's
Northeastern New York Chapter and facilitator of a children's
support group. "Parents should offer simple, honest
explanations whenever possible." Boivin uses large, colorful
puzzle pieces to explain how the brain works. The children in her
group learn how Alzheimer's disease makes certain parts of the
brain "sick", causing the person to act differently.
"I always make sure to leave the piece that represents
feelings intact, so kids remember their family member is
sensitive and still needs love" adds Boivin.

Jim McCrea, Ph.D., researcher and
author of Talking with Children & Teens About Alzheimer's
Disease (see Resources, pg. 6) believes one of the most common
mistakes families make is sheltering their youngest members from
the person who's affected. "Studies show that children have
a calming affect on people with Alzheimer's," says Dr.
McCrea. "Young people can be extremely caring and
resourceful, once they understand what's happening."

Sometimes, Brian is the only
person in his family who is able to communicate with his
grandfather. According to Denise, there are days when Thomas will
only leave the house if Brian is there to encourage him.
"When I'm able to help grandpa, it makes me feel good,"
says Brian.

Life as a teenage caregiver

Teenagers have different, yet equally important needs. "Being a teenager isn't easy, but
being a teenager whose mother has Alzheimer's disease is
especially challenging," explains Jessica, whose 46 year-old
mother is in the early stages of the disease.

"It's the little things that are the hardest," says Jessica. "Like wondering if
she'll remember to pick me up from school or recognize my
friends." Raia believes it is emotional support that
teenagers affected by Alzheimer's need most. "Sometimes,
they seem completely unaffected by what's going on, and that's
OK," explains Raia. "What's most important is that they
have someone to turn to when they need to talk." Jessica
agrees. "I talk to a few close friends, but mostly, I still
talk to my mom."

In some families, teenagers often are expected to assume the unofficial role of
"assistant caregiver." Boivin doesn't discourage
parents from involving teens or even younger children in daily
care or household chores. But she does caution them about
overwhelming young people. Boivin suggests finding a few
reasonable activities that the young person is capable of doing,
and asking them for some assistance. "It's appropriate to
ask for their help," says Boivin, "but be careful not
to overload them with too much responsibility. You've got to
allow them to be kids, too."

Help is available

Children, like adults, usually
feel better when they realize they're not alone, and that there
are other young people they can talk to who are going through
similar experiences. Many chapters of the Alzheimer's Association
have additional information available specifically for young
people, and sponsor support groups especially for children. To
locate the chapter nearest you call (800) 272-3900.

Tips for parents

Talk to your children about
Alzheimer's disease. Discuss changes in the affected person's
behavior as they occur.

Encourage young people to ask
questions. Help them understand what's going on and provide
age-appropriate information and explanation.

Remind kids that the behavior
of the affected person is a reflection of the disease. Help them
understand that the person may not always mean what they say, or
intend to act the way they sometimes do.

Educate and involve their
friends. Ask your children if they've discussed Alzheimer's
disease with close friends or classmates. Talk about ways to make
their friends feel welcome and comfortable in your home.

Let them help. Find activities
that the young person can help with. Be careful not to overwhelm
them with too many caregiving responsibilities.

Set aside time
for the kids. Find some time each day to give your children some
indivdualized attention, reassurance and emotional support.